Tuesday, January 25, 2011

Big Neon Signs

Friday morning Tomas had another suspected hypoglycemic seizure. I actually forgot to check his sugar because I was so in the middle of fixing him and getting sugar into his body. Again, this is the mystery metabolic disorder we are still hunting for. Friday night he spiked a fever and Saturday morning I had to take him to ER to get his ANC checked. That is his infection fighting blood cells, and because he runs chronically low any time he has a fever her needs to get checked. Since the only place to do that on a Sat. morning is ER - off we went.
His ANC was only midly low so he was able to just get IV antibiotics; however (damn that word) his overall WBC was very low, and his platelets were low also. This bought a call to the hematologist on for the weekend. Any guesses on who it was? The doctor whom I dismissed last week. Sigh. He sent us home, following ANC protocol. I think that is my biggest issue with him, he is a competent doctor, but I have never, not once, seen him step outside the box. Anyway, home we went.
Sunday Tomas still had a fever of 102, then in the early evening when I vented his stomach it had so much more blood in it then ever before. He wasn't gushing or anything - just so much more than usual. I called my husband in and even he thought it was a lot of blood. I debated about taking him in again, but then remembered the low platelets, so off we went again. The ER was packed that evening and it took almost an hour to get triaged. Once that happened though we got right in. The nurse said we trumped everybody out there so we went to the front of the line - kind of a strange perk but a most welcome one at the time.
The ER doctor said he would most likely be admitted, they ran in some IV Zantac to stop the bleeding, and drew labs. His platelets were up and his WBC was slightly up, but his ANC was slightly down; so another call to the hematologist on duty (yes, still the same doc) and he said it was ok to discharge him. I told the ER doc I was not comfortable taking him home with the GI bleed, fever, and funky blood numbers. She called the GI on duty and ran through everything, and he also discharged Tomas, with orders to see GI the next day because as it turns out his liver enzymes were very elevated and his liver was enlarged. He also doubled Tomas' dose of prevacid, which the nurse tried to give him by mouth (that is why I can NEVER leave Tomas' bed - just too many things can go wrong). I told the ER doc I didn't want to give him the med because he already had hardly any stomach fluid and I didn't want to make it worse. So I had to refuse it, and we went home, at 3am!!! Crazy.
Now I was supposed to follow up with GI for the elevated liver enzymes on Monday. I knew it would be a battle because of the difficulty I had getting Tomas switched over to the hospital clinic in the first place. First thing Monday morning Tomas' pedi called to find out what had happened over the weekend and he was just shocked that Tomas wasn't admitted. Me too. Anyway, he said to try the clinic and if I had difficulty to call him and he would run interference for me. I called the clinic and told them what was going on, she said she would call me back in a few minutes with an appt. 2 hours go by and the pedi calls to find out how things are going. I had to hang up with him though because the GI clinic was calling in. The woman on the phone said that the doctor said until Tomas is an established patient that I needed to follow up with the current GI. His new patient appt. was on Thursday, and I had been seen at his hospital. I called the pedi back and he called out to the old GI and got me an appt. that afternoon. In the meanwhile I called the hem/onc clinic and got an appt. for Tuesday morning with his regular doctor to follow up on the cytopenia issues.
Tomas' bleed was still under control and I went to the GI appt. and met with the doctor, whom I like very much. We were leaving because the oncologist wanted to do the whole "team admit" thing and work closely with the GI at the children's hospital. Anyway, the current GI walked in and spent an hour firing me. He was so nice and compassionate and just fully admitted that Tomas' care was beyond the scope of what his practice could offer. He though it was a great idea to team up out at children's. He said the best thing for Tomas would be to have a medical student assigned to him who could spend the hours of research necessary. He also admitted that he ordered the wrong test when he ordered the metabolic study for the glycogen storage disease. Turns out we waited 6 weeks to find out Tomas does not have a chronic inflammitory disorder.
As I was leaving the office, already feeling quite dejected, a voice mail came in from the hem/onc clinic saying that the appt. for Tues. morning had been cancelled and that Tomas did not need to be seen. To say I was at a low point was an understatement. What is it going to take to get someone to pay attention to this baby? Here he is with a GI bleed that has been going on so long it has depleted almost all the iron stores in his body, he is hypoglycemic like clockwork about 4 hours into a fast, he has chronic neutropenia which no one can explain, and an immune system that is so suppressed he is growing a bacteria in his urine that the pedi had to go look up because he had never heard of it.
So I got in the car and started talking to God. Clearly, this was not the path I was supposed to have Tomas on, but if He could please show me the right path in the next, oh let's say, 12.5 seconds I would greatly appreciate it. Do I let Children's try this team admit? Do I pack him and the girls up and head to Houston, do I wait it out until the summer when I can take him to NYC? I called a friend and she commiserated with me (thank you friend), and said she would pray that God send me a sign.
I hung up with her and not 10 minutes later Tomas' oncologist called. This is the doctor who was determined to help Tomas at our last appt. and wanted to get the team together to do the admit and testing. She talked with me for almost an hour, and we went over everything. She had heard through the pedi that I wasn't particularly comfortable with the GI switch over. I told her I wasn't because that doctor wanted to give me an appointment for March 21st, even after I told them that they were not seeing Tomas for feeding issues, but the GI bleed and elevated liver enzymes. It took the pedi calling for me to get the appt. on the 27th. She said that didn't really make any sense because she had met with him for an hour about Tomas and he was very intrigued. She said it sounded like a front office issue and that she bet me if she spoke with the doctor he would not know any of this had gone on. It turns out I misunderstood the pedi, he didn't call the GI to get the appt. moved up, he called her, and SHE called the clinic and told them to get Tomas in asap. She also told me that one of the swabs from Sunday' Er trip came back positive for parainfluenza, which could explain the WBC suppression and platelets, but is not a virus associated with elevated liver enzymes., that is all Tomas. She asked me to please give this a try. She cancelled the appt. for Tuesday because she wanted to see me the same day as the GI doc at the same location and save me the drive to Dallas. So come Thursday I meet with them both.
That evening the pedi called again to check on how things went at the GI. I told him everything that had happened and he was almost as relieved as I was. He was shocked that the GI had dismissed us, but agreed that the doctor was limited in what he could help us with. He also told me that any future ER visits should be down in Dallas. I like to use the satellite campus because it is so much closer. But he told me that he had never heard of giving someone IV Zantac to stop a GI bleed and then sending them home. He was mad that Tomas wasn't admitted (he doesn't have rights out there) and said that if he were in Dallas at the teaching hospital it would never have happened. He has been Tomas' strongest advocate and I am so appreciative of his efforts.
Sometimes God sends me signs so unobtrusive I don't recognize them until well after the fact, other times things happen that just nudge you along, and then there are days like these, when big neon signs hit you square on the head. And although it wasn't EXACTLY 12.5 seconds I am grateful that I was not left at that low place for long. I couldn't have stayed there anyway - Tomas is still sick, and so are both girls!

4 comments:

What a long ordeal. My prayers are with Tomas and you and the rest of the family. Children's in Dallas does have more specialists and care they can offer -- with the hospitalists, specialists, residents, fellows, etc.

All about Tomas

When I was around 5 months pregnant an ultrasound revealed a birth defect (duodenal atresia - a blockage between the intestines and stomach) in Tomas which also meant he had a high chance of being a Down Syndrome baby. About a month before he was born I had an amnio that showed he did indeed have DS. He was born on January 16, 2009 and had his first surgery when he was 32 hours old. After that, test result after test result rolled in. In the first month my family learned he had three holes in his heart, his liver was not working, and he had Transient Myeloproliferative disorder (a type of leukemia which resolves in the first few months of life). The second month revealed laryngomalacia (a collapsing larynx), primary and secondary aspiration, and severe reflux. He was switched to tube feedings and had his second surgery to correct the reflux that was causing him to suffocate. The TMD resolved when he was 4 months old, his liver started working when he was 5 months old, and the holes in his heart have closed without intervention. After that we found out his left lung is partially collapsed, he has a stomach hernia and a liver hernia and multiple bowel hernias, and was recently diagnosed with neutropenia. He had another 2 surgeries. He is on J-tube feedings, requires oxygen support, needs to be on a pulse oximeter monitor, and has 10 specialists who follow him. He is exactly what I never knew I wanted. He has taken our family and carried all of us to a place where every smile matters, where the days breathe with possibilities, and joy reigns supreme.

"The real choice in accepting or rejecting a child with special needs is never between some imaginary perfection or imperfection. The
real choice is between love and unlove, between courage and cowardice, between trust and fear. And that’s the choice we face as a society in deciding which human lives we will treat as valuable, and which we will not. "